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LynetteG
02-24-2010, 11:23 PM
I wondered what your flexibility is like after this surgery? I was told today that I will be fused from T2 to sacrum, so I wondered as I love to do yoga, whether I'll ever be able to do that again. Will I ever be able to sit in "Easy Pose" again, meditation pose (if you know what I mean)? Will I ever be able to do any of the yoga moves again? I know the doctor said I will definitely be able to swim which is great, because I love to do that, so at least I have that if nothing else :)

Also, anything else that you may think is good for me to know, please tell me tell me - okay? Thank you :)

sheri66
02-25-2010, 12:34 AM
Lynette,
Your having a longer fusion than me.I am fused T -10 to sacral pelvis.I cant comment on yoga because I have never did yoga.But I have lost alot of flexibility.I can put my shoes and socks on but it takes awhile.I can shave my legs but that is harder to do but I get it done.The only thing I am not able to do is my toe nails,so I just go get a pedicure.
Sheri

titaniumed
02-25-2010, 12:46 AM
Lynette

It seems that the T2-Pelvis procedure is becoming quite popular now! LOL
Here is a tread by started by dokam. There have been a few others here also.

http://www.scoliosis.org/forum/showthread.php?t=10078

Im glad you are happy with Dr Cronin. Do you have his or his nurses e-mail address for questions? If so, ask him how long will my recovery be?

Ed

LynetteG
02-25-2010, 06:39 AM
Ed - I actually did ask that question and they said it just varies on each individual. Some people heal a lot quicker than others. Some can go back to work after eight weeks, while others can take longer. So - I will just keep a positive attitude and my determination to heal quickly and using hypnosis, so we'll see :)

Thanks for the link to that post, that was really helpful.

Ed - How long did it take for your spine to fuse?

titaniumed
02-25-2010, 10:30 AM
I fused in 6 months. They used BMP.

https://www.infusebonegraft.com/bone_morphogenetic_proteins.html
https://www.infusebonegraft.com/how_infuse_works.html

They used NO bone on me. I had some extensive low end work done, and BMP was selected. My x-ray is in my first thread.

Without BMP figure 12 months.

Ed

mbeckoff
02-28-2010, 10:40 PM
I will be fused T1 to sacrum on March 11

Melissa

jrnyc
03-01-2010, 03:40 AM
hi lynette...
been following your situation with interest...i wish you a smooth surgery...and uneventful and rapid recovery!

i think whatever flexibility is lost is a trade off...that is necessary if the surgery is necesary...
of course, they say that one can still bend at the hips...Ed would be a good person to ask...as he reports skiing, snorkeling, scuba diving & all that stuff! :)
surgeons i have consulted tell me i still have alot of flexibility in my spine, all things considered (the scoli, arthritis, stenosis, etc etc)...but i have lost so many activities...had to retire early from work due to pain, can no longer work out at gym for same reason...means that the flexibility i have left aint doin' me all that much good right now......:(
i guess the possiblity of not being able to do some activities has to be considered before surgery...just to be ready for all contingencies...a trade off one must consider, i suppose...to try to avoid surprises as much as is possible....
i have been using pain management while i struggle with my decision to have surgery...i know it is only a temporary stop gap...but it aint stoppin' much lately!......... :rolleyes:


best regards....
jess

LynetteG
03-01-2010, 05:20 AM
Jess - when you're in that much pain I feel that it's time to get surgery, because already your quality of life is suffering. I don't feel as much pain as many others do right now, but boy each and every day is getting worse and worse, just doing laundry, and cooking dinner, when I'm standing for more than ten minutes I hurt bad now, and I want to be able to do fun stuff with my boys and have a bright future please God, not a very painful very deformed future with possibility of my abdominal organs lifting up to eventually crush my heart and lungs - definitely not an option for me. I would be lying if I told you I wasn't scared, but lately I get through my days really well just enjoying my sons as much as I can. But it's the nights that are killing me, I can't sleep and lay there with pretty bad anxiety, probably should get myself something from the doc' for that. I'll be seeing my doc' soon so I'll ask for some anxiety pills I think :)

titaniumed
03-01-2010, 10:07 AM
The best way to deal with anxiety is to start walking, or pump iron.

Donít run to your GP looking for drugs..... The next thing you know, you are taking 30 pills a day, and you wont know your name, like some of my neighbors.

The Docs donít like it when you walk into surgery with a mix of chemicals in your system. It only complicates matters...
Ed

jrnyc
03-01-2010, 12:12 PM
some people are now in too much pain to walk...is that your situation, lynette?

it is mine by now...

jess

rich1752
03-01-2010, 01:33 PM
I'm not fused down to Pelvis, but my doctor recommended it. We talked and talked about the consequences of going down to pelvis or not. He advised me that if I don't do it now, I might need another operation in the future. I told him that I prefer not to go down to pelvis, because of the lack of flexibility, being only 38 years old. We made a deal, that if the disc wasn't too bad, he would go down to L5. I was happy with the operation because of the L5 fused, but I still run the risk of having another surgery in the future, but hope new surgical procedures will be in place by then.

I went on my first 2 mile walk this morning! I had my surgery on December 9th. I quit my pain meds two days ago, cold turkey, so feeling all withdrawls symptoms.

good luck on your surgery

rich

JenniferG
03-01-2010, 02:22 PM
I have to say, taking one anti-anxiety pill a day wasn't a concern for my doctor and it made a huge difference to me, getting through the time to surgery. At that time I had 8 months to wait and I am very grateful for the meds being available and I did not increase from my one per day, nor did I want any increase.

I took my last anti-anxiety pill the day before surgery.

I also got fit, and I know that was a big help as well. I was very calm and positive going into surgery, a complete turnaround from the year before when I was told I needed the surgery. I always recommend fitness if pain permits.

LynetteG
03-01-2010, 04:10 PM
Jess - You're right walking is very painful for me now - so is swimming believe it or not. However, I'm still walking about 40 minutes every day, or I will swim about 60 laps in the pool if I get a chance to get to a pool while the kids are at school. I'm determined to go into that surgery in as great health as I can be. I've decided against the anxiety pills anyway Ed, I really don't like taking pills of any kind unless I absolutely have to.

titaniumed
03-01-2010, 05:17 PM
Jess
If you cannot walk and the quality of your life is being compromised that much, it sounds just like my story. I waited a long time and couldnít hang any longer.
When life gets too painful, we have to be very brave..... I would not reverse my decision on my surgeries. Totally satisfied. It didnít happen overnight, thatís for sure, but now Im confident in my statement. Being fused all the way down for me, is not a problem at all really. I donít even think about it any more.

Rich
Good news on quitting the meds. When I quit, the pain increased for a few days, then after, the improvement was rapid. Your 3 months. Congrats.

Lynette
Yes, thatís what Im saying. Should have worded it differently. "If you donít have to" or "as a last ditch effort". Exercise is so important. At least walking or some sort of movement.

Jen
Your 1 year is coming up. Thought Id remind you. Ha Ha On a percentage improvement rating, how would you rate yourself? Or, how far along do you feel you are in your recovery?

Ed

loves to skate
03-01-2010, 06:09 PM
surgeons i have consulted tell me i still have alot of flexibility in my spine, all things considered (the scoli, arthritis, stenosis, etc etc)...but i have lost so many activities...had to retire early from work due to pain, can no longer work out at gym for same reason...means that the flexibility i have left aint doin' me all that much good right now......:(
i guess the possiblity of not being able to do some activities has to be considered before surgery...just to be ready for all contingencies...a trade off one must consider, i suppose...to try to avoid surprises as much as is possible....
i have been using pain management while i struggle with my decision to have surgery...i know it is only a temporary stop gap...but it aint stoppin' much lately!......... :rolleyes:


best regards....
jess

Jess, I would be concerned that if you can't exercise anymore, might you just lose the flexibility that you have now if you wait too long to have surgery? Just wondering. Sally

JenniferG
03-02-2010, 03:50 AM
Hi Ed,

My one year anniversary is tomorrow. You have a great memory! I celebrate by seeing Dr. Askin in Brisbane tomorrow and lunch out afterwards. Hopefully he'll cut me loose if everything's in its right place. I'm only having x-rays so he won't be able to tell me if I'm fully fused. I think a ct scan is necessary to see if fusion is complete.

As for how far along I think I am in recovery, I've thought 100% for a while now. No pain since 3 months, and my flexibility has improved since then. Still can't trim my toenails, though trying would make a good Funniest Home Video. But that's the only thing I can't do, so I'm happy with that.

Vali
03-02-2010, 04:03 AM
Hi Jen,
Best of luck for tomorrow. Hope you get the all clear. Happy Anniversary!

Doodles
03-02-2010, 12:42 PM
Jennifer--Happy Anniversary! You are doing so well and have been such an encouragement to me on here since I was just a few weeks behind you. Thanks for all of your help! I hope your next year will continue to be even better! Janet

Confusedmom
07-05-2010, 09:20 PM
I wondered what your flexibility is like after this surgery? I was told today that I will be fused from T2 to sacrum, so I wondered as I love to do yoga, whether I'll ever be able to do that again. Will I ever be able to sit in "Easy Pose" again, meditation pose (if you know what I mean)? Will I ever be able to do any of the yoga moves again? I know the doctor said I will definitely be able to swim which is great, because I love to do that, so at least I have that if nothing else :)

Also, anything else that you may think is good for me to know, please tell me tell me - okay? Thank you :)

Lynette,
I was wondering how you answer this question yourself, now that you are fused? Are you regaining flexibility? Dr. Bridwell just recommended T2 or T3 to sacrum for me.
Thanks!
Evelyn

JenniferG
07-06-2010, 12:57 AM
Good question Evelyn, though it's still early days for Lynnette. I'd be interested to know as well.

Janet, I'm sorry I didn't reply to you back in March, I just saw your post! The good news is since the time of writing, I can now trim my toenails. So things just keep improving, long after you think you've reached the end of the recovery road.

"I hope your next year will continue to be even better!" Ditto to you too Janet. We'll have to have another chat next March.:)

LynetteG
07-06-2010, 06:41 AM
If you notice on my later threads my doctor changed his mind about my fusion and now I'm fused from T9 to the sacrum. My flexibility is better now than it was right after surgery. I can now get things off the floor without my grabber -though not too easily. I haven't done any yoga yet because I had femoral nerve issues, and though my leg is much better now, it hurts if I try to sit back on my heels from a kneeling position, so I can't do that yet. But at least now I'm walking fine and can climb stairs normally again.

TexEx
07-06-2010, 07:50 AM
Lynette:

My fusion is also at T9, but like Rich, my doctor chose to go only to L5 to attempt to save some mobility. He did not feel I had enough degeneration at this time to warrent fusing the sacrum.

I am about where you are now too in my flexability. I can now pick up things off the floor. I am now making my self do it more and not relying on my kids as much to help pick up. I am also doing leg squats to strengthen my leg muscles, this helps with lifting and getting up and down to pick up things.

The only thing that I still really rely on my grabber for is getting clothes out of the drying, bending over and in does not work so well.

As we had our surgeries so close, sounds like we are on the right track. My doctor said that my fusion is not complete and should not be, expects to see it as six months.

I was told to do core strengthening and muscle stretching and toning. I guess we have to just be patient and slowly that range of motion and flexability will come back.

Like so many others, I had lost so much range of motion and there was so little that I could do pre surgery, anything I get will be a blessing. I just want to be able to ride bicycles and play in the pool with my kids and walk and work out again. If housework has to suffer so be it :).

Keep up the good work. Lets keep posted on our progress!

Melissa

Surgery March 31,2010
T9-L5
Pre Op- 60 Degree Lumbar
Post Op - 20 Degree Lumbar

Back-out
07-06-2010, 09:57 AM
I was told to do core strengthening and muscle stretching and toning. I guess we have to just be patient and slowly that range of motion and flexability will come back.



HOW?

I'm very concerned abt core strengthening, stretching and toning. (Would have just asked "how?" but site requires >10 characters :rolleyes:).

TexEx
07-06-2010, 10:11 AM
My sister is a Physical Therapist. She gave me very simple core exercises. There are about 4 or 5 such as lying down and pressing your lower back to the bed, an excersice called "the bridge" where you tighter your abs and lift your lower back off the bed for 5 seconds. She also gave me some back and leg muscle stetching excersices to do.

Please do not try any of these without the instruction of a licensed PT. But there are basic exercises to begin to strenthen these muscles as we start our recovery. I also first checked with my Doctor at my 3 month follow to make sure that it was okay to begin to do this.

Melissa

Susie*Bee
07-06-2010, 11:44 AM
Please note my scoliosis nurse/surgeon said never to do bridging. At least not while the fusion was taking place. I don't know if it's alright to after that first year or so. That was their main concern with going to PT.

Here is a link to a post from quite awhile ago, where I wrote out and attached some of the core strengthening exercises my physical therapist had given me. Please note the caveat at the beginning though-- I had been through about 5 months of arm and leg strengthening first, and was almost 1 year post op when I started these. I am not fused to the sacrum, but mine is still a long fusion - T2-L4.

http://www.scoliosis.org/forum/showpost.php?p=59707&postcount=14

Best wishes to all of you.

Back-out
07-06-2010, 12:28 PM
Those are GREAT, Susie Bee. At first I was disappointed that it didn't include pictures, then I realize you'd written them out yourself.

MANY thanks.

You are confirming what I expected, that until fusion is assured, one really can't/shouldn't do core strengthening exercises. I think that pretty much anything one does, regardless of the position, risks bending the fusing spine if the muscles are tensing up - even isometrics. There's just that much bending applied on the spine.

How could it be otherwise? :(

Doodles
07-06-2010, 01:09 PM
Jennifer--No problem. Maybe in a month I can do my toe-nails too--I'm about a month behind you. I did in fact sort of do them again last night but it sort of looks like someone gnawed them off. I hope to improve. Janet

TexEx
07-07-2010, 06:20 AM
I guess all Doctors are different, but my doctor emphatically says to "let your body be your guide". At this point your body will tell you what you can't do before you will injure the fusion. I am allowed to do anything I feel like doing with the exception of "jarring" or twisting activiites, such as horseback riding, white water rafteing ( I am going to Colorada so I asked about those specifically).

He told me I can bicycle ride, swim, the PT, eliptycle machine at gym, etc. I even asked about lifting and he said I can lift as much weight as I can until "I feel it in my back". Naturally, I am still quite carefull. My lifting I would say is still in the 10 pound range.

Basically, I feel that the Doctor's orders and common sense will be my best progress and we all have to do what our doctor requires for our best recovery.

Melissa
Surgery-March 31, 2021
T9-L5
Pre Op Lumbar 60 Degree Curve
Post Op Lumbar 20 Degree Curve

Susie*Bee
07-07-2010, 07:14 AM
Melissa-- it could also have a whole lot to do with the length of our fusions... mine goes almost to my neck (15 levels), so the stress of bridging would be immense. This thread was originally about T2-sacrum, so that is what was on my mind when I posted. BTW, your signature says your surgery was in 2021... (at least I think that's what I just read, although I did just get up and maybe my eyes aren't working right yet!!!)

TexEx
07-07-2010, 07:28 AM
Susie*Bee

You are absolutely right! That teaches me to post pre-cafeine:). My surgery was 2010.

I agree that there is probably a big difference in doctors' orders based on length of fusion. Mine was only lumbar. That is why I hope that everyone is very careful as they read these threads to make sure that they are looking to make sure that they relate to thier type of surgery.

I have caught myself reading then realizing that the individual had thoracic fusion and would not necessarily have the same issues as I do.

You made a very important point everyone should note.

Melissa

LynetteG
07-11-2010, 07:25 AM
Melissa - my fusion is quite long all the way to the sacrum, and my doctor says the same as yours, let your body be your guide. I have been also doing physical therapy, strengthening the core from the inside out basically, a lot of correct breathing exercises using your stomach to breath and not your chest, a lot of people breathe incorrectly through their chest, so being taught how to breathe through your stomach strengthens the core immensely. Also I'm doing arm weight exercises, lat pulldowns with weights, (my doctor said these are all fine to do now), squats, and other leg exercises, and with doing all of these exercises it has given me more movement and strength in my body, I don't feel so stiff now which is great. You sound like you're doing great Melissa, it's great to hear what you're doing :)

Chris43
07-11-2010, 06:23 PM
Hi, I'm pretty new to all of this. I asked all of my questions in the section titled:Parents of adolescents diagnosed with idiopathic scoliosis.I just happened to be reading some other posts when I came across this thread. I'm curious as to whether you were all diagnosed with scoliosis when you were adolescents and your parents opted not to have the surgery done when you were younger. Did any of you wear a brace and then told you were out of the woods? Did any of you have parents that opted for exercise programs, such as Schroth instead of the surgery when you were young? Or were you all diagnosed with scoliosis as adults? I am a parent of a 14 yr old who was just diagnosed and I'm trying to figure out what happens to the children whose parents took a more conservative plan than surgery. My daughter has a T41 and L48 curve and she has just been put in a Boston brace 22 hours a day. We really don't want our daughter to have the surgery, but after reading some of the stories here, you all seem like you were in alot of pain as you got older. I keep hearing that my daughter may end up with terrible pain as she gets older if we don't have the surgery. I want to make the best decision for her. Any comments would be greatly appreciated!Thanks!
Chris

Confusedmom
07-11-2010, 08:54 PM
Chris,
You might get more responses to this question if you post it as a separate thread in adult surgery.

Anyway, to answer your question, I for one wore a Boston brace when my curve reached the 30+ area in my early teens. It worked, straightened me out, and when I graduated from college I was told I would not need to go back to my scoli doctor.

Eight years later, I was having some back pain and went to a scoli doctor. Was shocked to find out my curve had progressed to 55* and he recommended surgery. I still haven't had it (now age 38), and now I'm somewhere between 68-75*, depending on the xray.

I kind of wish I had had surgery as a teen because the recovery is supposed to be so much easier. On the other hand, I don't know what I would do if it was my daughter looking at surgery. You probably are safe to wait a while and see if her curve is progressing or not. I think I have read somewhere that braces stop progression of 20-40% of teens who wear them. So you might get lucky!!

Evelyn

LindaRacine
07-11-2010, 11:35 PM
Hi, I'm pretty new to all of this. I asked all of my questions in the section titled:Parents of adolescents diagnosed with idiopathic scoliosis.I just happened to be reading some other posts when I came across this thread. I'm curious as to whether you were all diagnosed with scoliosis when you were adolescents and your parents opted not to have the surgery done when you were younger. Did any of you wear a brace and then told you were out of the woods? Did any of you have parents that opted for exercise programs, such as Schroth instead of the surgery when you were young? Or were you all diagnosed with scoliosis as adults? I am a parent of a 14 yr old who was just diagnosed and I'm trying to figure out what happens to the children whose parents took a more conservative plan than surgery. My daughter has a T41 and L48 curve and she has just been put in a Boston brace 22 hours a day. We really don't want our daughter to have the surgery, but after reading some of the stories here, you all seem like you were in alot of pain as you got older. I keep hearing that my daughter may end up with terrible pain as she gets older if we don't have the surgery. I want to make the best decision for her. Any comments would be greatly appreciated!Thanks!
Chris
Hi Chris...

You'll find a bunch of each that you mentioned. Scoliosis treatment is an imperfect science. All you, as a parent, can do is to choose a good specialist who can help you make informed decisions about your daughter's care. Most scoliosis specialists agree that there is no absolute proof that bracing works. No matter what you're told, there is no way to know whether bracing, or any other alternative treatment, will keep your daughter out of the operating room. Unfortunately, even surgery isn't a guarantee against more surgery somewhere down the road. Until the day when the medical community does know what works, I think it's reasonable to have your daughter wear a brace for as many hours as possible. However, if your daughter has the type of personality that will make wearing a brace into a drama that will last years, it's probably not worth ruining your relationship with her.

Regards,
Linda

Pooka1
07-12-2010, 05:28 AM
I think I have read somewhere that braces stop progression of 20-40% of teens who wear them. So you might get lucky!!

Based on the few controlled trials, watching and waiting "stops" progression about 70% of the time.

About 20% are bracing failures... wore the brace but the child still needed fusion. These are very easy to identify though the reason may not be clear... it may be due to lack of compliance or that the child had a connective tissue disorder. Or the child was compliant, had AIS and still failed brace therapy.

That leaves only about 10% where the brace appears to stop the progression, at least at first. And then we can ask how long it stopped the progression. There is a reason why we get these testimonials about how people wore their braces and were clearly sub-surgical at skeletal maturity only to need fusion for progression sometimes even a few years out. That's a kick in the teeth right there.

ETA: There is even less data available for PT therapy. And Schroth at least admits PT alone will not hold the curve through the adolescent growth spurt and they will brace.